Newly diagnosed 15 yr old son - Remicade??

i wouldn't

If he is malnourished, then, he's got some serious absorption issues, probably from inflammation. Sometimes, it is possible to have very minimal symptoms even if there is inflammation going on. How was he diagnosed? Did the doctor do a colonoscopy and/or an endoscopy? How severe was the inflammation? Were any fistulas discovered?

Has he been tried on any other medication at all? My husband is on remicade and it has worked really well for him, but it does come with risks. A short course of steroids, and a non-scary med like Lialda or Pentasa may work for him (these meds mentioned are not immune suppressors, just topical anti-inflammatories). If he still has trouble while on these meds, you can add Remicade.

Sounds like the diet changes are helping, but maybe not 100%. I believe that if you have crohn's disease, you must take a maintenance med to keep future flare ups from being too severe. The trick is to find the right maintenance med - one that will keep your symptoms down to a minimum, give you quality of life, and keep flare ups to a minimum.

PV

I would, my niece was 15 as well, no pain just d and her scope looked really bad, probably similar to your son, her gi put on rem right away and she went into remission within a year, and still is with a lighter type of med now. my thoughts are to be aggresive with it when your son is young. I'm on rem now, works pretty good now that I'm on stronger dose, and I take vicodin as well for cramping and lower back. lower back is from rem, cramping is just cd, 8 months ago I would have said no way start out with asa drugs, but now that I know rem alittle better, and how my niece did so good with that aggressive approach. I've had cd for40 years.

if it was my kid, i would go for rem. that is me. sounds like you have good gi, listen to him.

rlsnights said...


How bad is his growth/weight failure - what percentiles if you know them? If you don't know and feel comfortable sharing, I can tell you the % if I know his height, weight and age.


www.dragonpack.com/ibdsupport/parents/

Best wishes,

Patricia

Mainly on this part, what is this growth/weight failure and mine is 5'7", 105LB, and 17 (just turned) what would be mine?

Before launching into a lengthy response about starting remicade I want to tell you that you do NOT have to do things on the doctor’s preferred schedule. I think it is best to be honest with the doctor about your concerns and to ask for more information and time to decide within reason.

If he feels it is urgent to proceed, then the GI needs to explain his reasons to you so that you and your son understand his thinking. If he can’t do that then you may need to find another doctor because this is a chronic condition we’re talking about and communication problems with the doctor are not likely to get better with time.

An acronym that you might find useful when talking to doctors is BRAND.

B – what are the Benefits of the proposed treatment?
R – what are the Risks?
A – what are the Alternatives?
N – what happens if you do Nothing?
D – do you have all the information you need to make a Decision?

Now, to answer your original question - knowing what I know now about Crohn's, if it were my son I think I would go ahead with Remicade or one of the other biologics.

Why?

1. Your doctor recommends it

2. Research supports his recommendation

3. The alternatives either carry higher risks of side effects (prednisone for example), take a lot longer work (6-MP and Methotrexate), or can be tough to stick to (enteral feeding and major dietary changes) at the same time that they are unlikely to work for more than a short period of time or only work if you keep doing them religiously.

4. Kids tend to have more aggressive disease than adults and it needs more aggressive treatment to get it under good control. Failing to control the inflammation could have really bad short and long term consequences like surgery to treat an obstruction that removes part of his intestines at age 15, reducing his body’s ability to absorb nutrition for the rest of his life.

5. Getting him into remission will help ensure his physical well-being for many years to come because his body/brain/bones will be able to develop more normally than they would otherwise. A biologic can be the quickest route to remission.

6. His quality of life (assuming he responds) will be better. Once they get into remission, many kids feel like they have gotten their lives back. They can go to school or the mall w/o worrying if they will have an accident in front of everyone. They can play sports, go on sleepovers, excel at school – all without struggling against daily severe symptoms. It won’t be perfect, they still have a chronic disease, but it will be much, much better than it would be otherwise.

Are there alternatives to Remicade – certainly. There are:

1) “approved” mainstream medical treatments
immune modulators
oral 5-ASA drugs like Pentasa
antibiotics like Flagyl and Cipro, and
oral steroids including Entocort and prednisone

2) dietary interventions (enteral nutrition, SCD and others)

3) “off label” (LDN) or clinical trial treatments and

4) Chinese herbs, acupuncture and other non-Western medicine approaches and probably some other unusual options I've neglected to list.

I'l send you an e-mail with more details on these other options if you want. Just let me know. It's too much to post here.

We can all offer opinions about treatment but you and your son must decide “how” to decide. What kind of information do you need, how much info do you need, who are you going to listen to and get info from before deciding, how will you know that you have enough info to make a decision.

And because your son is 15, his involvement in treatment decisions is absolutely necessary in my experience. He must agree with and accept the necessity for any particular treatment and he must be willing to do it faithfully for a reasonable period of time. He must understand intellectually the choices available and why a particular choice is “the best” from his doctor’s point of view. Then he has to decide whether he's going to follow that advice.

It’s a journey and you can almost always change your mind and do something different. There is a danger in delaying treatment – after all not choosing a treatment is in fact choosing no treatment. But it’s also important to have your son on board and for you all to feel reasonably well informed and comfortable with the treatment decisions that have been made.

Best wishes -

Patricia

I decided I wanted to add to my post. It's a description of our journey over the first 2 years after my son's diagnosis. It will help you understand why I said it may be best to do Remicade.

After my son was finally diagnosed at age 10 (he'd had growth failure since he was 7), we had a ped GI who was very passive. She put my son on Pentasa and waited. After a couple months his hemoglobin had dropped to 8 due to bloody stools. Her response was to start him on oral iron and rx prednisone.

Instead we started him in a short (6 weeks long) phase 2 clinical trial of Leukine, which had showed great promise in treating CD in the phase 1 trials. It did not help at all so back we went to the regular ped gi.

My personal experience with prednisone plus my own research (done pretty much in a vacuum) led me to want to try enteral nutrition before putting my 10 year old on prednisone. Our ped gi was opposed to this plan, really opposed. She insisted it would not work and I was putting him at risk of perforation, etc.

My son's CD presentation is atypical. He gets severe constipation - to the point that his intestines shut down. After his 2nd hospitalization for clean out I insisted that we be allowed to try enteral nutrition. The ped GI gave in and said OK. But she had no idea how to do it. I finally found a dietician who knew about doing enteral nutrition with bariatric patients and she helped us a lot.

I had also found Dragonpack by then and got a lot of support from other parents who were having good success with enteral feeding.

Before the enteral feeding, my son's colon and rectum were a mess. He had bleeding ulcers in his small bowel. He had perianal disease.

After 2 weeks of enteral feeding his ped GI insisted on doing a sigmoidoscopy. If he was worse she would insist we start prednisone (she was sure this would be what happened). So she did the sig. His lower colon was visibly improved - like 80% improved. He still had apthous ulcers and obvious inflammation at the places where his disease had been the worst but no open ulceration. There was no denying his intestines showed a remarkable improvement.

She was stunned. My son continued the enteral feeding for 8 weeks then she repeated the sig. His lower colon and rectum was beautiful. One apthous ulcer. His perianal disease had improved a lot too.

But my 10 year old son was struggling. He could hardly stand to watch TV because of the food commercials. We had stopped eating in front of him or even preparing much food in the house because he got so upset.

So at that point we started a food re-introduction plan. We started with 2 foods that my research had suggested were well tolerated and unlikely to cause a flare. White rice and thoroughly cooked pears.

After 2 weeks of that he was having tummy aches. Then the constipation started. She did a new sig and his colon was inflamed and there were many new apthous ulcers. His labs had worsened considerably.

I was so sad. The ped gi was sad too but she told me I had changed her opinion about enteral feeding 180 degrees. She said she was going to recommend it to her adolescent patients who were not responding to anything except prednisone and thanked me.

So I gave in and we put my son on prednisone and 6-MP. The prednisone was horrible. He would have to have life-threatening acute symptoms before I agreed to give him prednisone again for more than 4-5 days. And it took months to wean from the pred. The 6-MP helped but the severe constipation continued to be a problem.

Not long after starting the 6-MP we were forced to change health plans and had a new ped GI. He insisted my son was in remission (despite many signs that my son's remission was only partial) and my son's constipation was a sign of a motility disorder.

After many invasive tests they could find nothing wrong to explain the constipation. They wanted to send my son for biofeedback training that involved putting sensors on his anus so he could learn how to tell when he needed to poop. I said - enough. NO more. We increased his Miralax to 5 doses a day I think, added a laxative, put him on a high fiber diet.

But the constipation continued.

After my son was hospitalized with obstipation (his intestines had completely shut down) for the 3rd time in 6 months, this ped GI said he wanted to do surgery and give my son a cecostomy. The ostomy would be used to flush the colon daily, getting rid of the stool as if you were giving an enema from the top.

He said it would be more convenient for everyone... and implied that we were not actually giving our son the medications that had been prescribed or he wouldn't be having these problems.

I think you can imagine my reaction to that.

I took my son for a 2nd opinion to a prestigious ped GI at a major teaching institution who specialized in treating both IBD and constipation/motility problems in children over the objections of the local ped gi. He even told his staff not to send my son's records as I had requested. I discovered this the day before we left to see the 2nd opinion doc. Fortunately I had gotten a lot of my son's records as we went along and had them to hand carry with me.

The 2nd opinion verdict - my son was not in solid remission and needed to go on Remicade or Humira (which was in clinical trials). My son needed further tests that no one had done (a small bowel follow through for instance) to figure out the extent of his small bowel involvement. If we didn't get the perianal disease under control soon his opinion was that there would be abscesses and fistulas - if there weren't any already.

We came home and I got into a huge fight with our local ped gi. It got pretty ugly. I insisted that the additional testing recommended by the 2nd opinion doc be done over their objections. The docs here continued to insist my son was in good remission and there was no need.

They finally agreed and the results of the small bowel follow through showed that my son had extensive active disease in his small bowel with multiple inflammatory strictures including one that was at least 6 inches long.

The next day I told our pediatrician that we were going to a different ped gi at a major medical center 100 miles away rather than the one we had been seeing at our local "major" medical center. I told him I would do whatever was necessary to appeal any denials from our insurance. I also told him I was filing a complaint against the local ped gi that day.

I had one final, brief phone conversation with the local ped GI and the man didn't even have the guts to apologize to me.

The following day we had medical group approval to go to the new ped GI and 2 weeks later my son started Humira as part of the clinical trial. It took about 3 months on Humira (which is now recognized as typical) for my son to go into what appeared to be complete remission. His perianal disease had vanished as if it had never been. His constipation was gone too. His labs were almost completely normal and eventually everything came into normal range. He started to grow.

So that is the context I bring to the table. Will your experience be the same if you continue with dietary interventions as the sole treatment? That is impossible to know. Your son may well respond with solid remission or have a strong response to other meds.

Follow your instincts. Do what you think best and know that you are making the best decision you can with the information available. If it doesn't work out or things go wrong, you will deal with it then. And again you will make the best decisions you can.

Best wishes,

Patricia

Thanks Tom.

No the Humira was stopped because my son decided to stop doing it. He was 14 at the time. The shots were always very painful for him. He got a mild flu-like illness after each shot despite premedication with Tylenol and benadryl.

His remission had been really solid for nearly 2 years and he'd been doing Humira for 2 1/2 years.

I think, for my son, in addition to it being painful and making him feel lousy for 2 days doing the shots every 2 weeks reminded him, every 2 weeks, that he had Crohn's. Without the shots he could pretty much ignore this info.

His ped gi and I were not happy about it but my son was clearly unwilling to continue the shots. The ped GI said "They (adolescents) all do it (go off their meds)." and told my son it was a matter of time.

The Ped GI said it was a matter of when he flared and the ped GI hoped they wouldn't have to do anything extreme like surgery to treat the flare. My son's reply? "you mean IF I flare."

My son did agree to continue on Methotrexate which made me feel better.

I don't think his ped GI shared that feeling but at my son's last visit he commented that it was great the Methotrexate was holding my son in remission after almost a year off Humira.

My son's growth had finally gone from the low 20%s (first year of Humira) to 35% and his labs were perfect. My son's growth % at diagnosis was 11%.

This is why I stressed to Julie that her son's active agreement and participation in the treatment plan is essential to it's success.



To respond to your notes about top down vs. bottom up

At this time, there seems to be fairly wide consensus among the top research/clinical Ped GI's that the top down approach, *in kids who are presenting with mod-severe and severe CD*, is the best route to go. Depending on the case, there is a sort of intermediate position that immediate treatment should, at minimum, include an immune modulator with some cases clearly warranting use of biologics right away.

There have been a couple articles published exploring the differences in CD between early onset and adult onset which have outlined the negative short and long term impacts of aggressive disease during childhood and adolescence. Aggressive disease seems to present more often among early onset patients than in adult patients.

The DDW congress has had multiple presentations on the subject in the past 2-3 years. And there are now multiple studies in the works studying growth failure in CD which continues to be a problem for many kids who are deemed to be in full remission. I could go on but my reading of the literature and discussions with my son's doctor appear to support this approach with early onset severe disease. At least in the short to medium term.

The newest treatment decisions trees for treating early onset CD now usually include enteral nutrition as an effective initial intervention especially when coupled with starting immune modulators. There are now regular references in the literate to limiting the use of prednisone as a frequent or long term treatment although Entocort has largely taken it's place (which I'm not sure is a whole lot safer than prednisone). These are major changes in practice standards - at least from when we started this journey 5 years ago.

Since it's impossible to know what will happen 20 to 30 years down the road, we are left with the things we do know for sure. Right now, our kids are suffering, they have stopped growing, their QOL may be terrible.

How do you, as a parent, process this information and make your decisions about treatment ? It is hard, even agonizing for most parents faced with agreeing to immune modulators or biologics even after years of treatment failure on "lesser" drugs and interventions. At least now we have 3 biologics to choose from should the first one or two fail or lose effectiveness.

No matter what Julie and her son decide, they will have my support.

Julie -

It's not a matter of choosing between your current "treatment" of dietary interventions and Remicade or any other drug treatment, of course.

You can do both.

Patricia

I'vd had this crappy ass disease for 40 years, I've had multiple surgeries, have almost died when Iwas 20, I wish back then they had a rem, maybe I would still have most of my small bowel. no brainer here, med's (your choice) and diet. my past exp. with pred. is I'll take anything except pred, and If I had to, no longer than 6 days. sometimes this disease, you have to stay on pred for a long period of time, I think pred is the worst of all the med's as far as long term side effects, the arthritis can be disableing. I have a great gp she just can't stand pred, she said if pain med's keep you off pred, she prefers pain med's. and she doesn't like the use of too much pain med either. I cry when I read kids posts or parents with kids, to me it's heartbreaking. I remember as a kid my parents were heartbroken,no med's back then, sulfa and heavy duty pain med's

Julie, I'm glad you're back and getting such great feedback here.  The meds available are confusing, but let me see if I can sketch out the basic types (you can probably get good info from the CCFA website). 

There are anti-inflammatories, primarily 5-ASAs (Asacol, Pentasa, mesalamine and others) that work by releasing the active chemical in the bowel.  The active chemical is similar to aspirin.  The medicine is very safe, but unfortunately not very effective for serious disease.  Different versions work on different parts of the bowel.  None of them work much above the ileum I don't think.

Then there are the immune system meds.  I guess steroids can be included here - they modify your immune response.  So do some of the chemotherapy drugs like methotrexate (MTX), imuran, MP6.

Then there are the newer TNF modulators, remicade and humira (and others?).  I believe these also work on the immune response, but differently than the others.  I am not the expert - there are many others here with much more knowledge than me.  You will also develop this knowledge as you go through this with your son.

Since everyone's perception of pain is unique to them, and children are not, in my experience, good reporters of pain, I don't know if you can know for sure that he's not having belly symptoms.  I would be somewhat concerned about relying on bloodwork alone - I've never had a CRP higher than 4, but I still have painful joints, occasional flares, etc. etc.  Has your son hit puberty yet?  Aside from his ultimate adult height, the nutritional issues could affect maturation of other things too.

Patricia,

I don't want to hijack this thread, so I've posted new titled to you. 

Tom.